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Greetings from SF, CA

Posted: Mon Mar 12, 2012 5:44 pm
by Stillhaha
I feel rather alone with my MS, like I have nobody 'on my team,' so to speak.

My Diagnosis Day finally happened in late October of last year. It felt more like a sales appointment for Tysabri than having an informed discussion with a grown adult about the options available to me.

I choose to take no medication for my condition, and never intend to start doing so. The acupuncture I manage to afford recently started making a difference, but I have no more money left to spend ($5 twice a week) on it this month. Each month becomes a little easier, I tell myself. This is #2 back in SF.

Things which sound perfectly sensible, like finding an electric wheelchair, run a very unlikely chance of happening this year. The Rollator I use on the sidewalk only takes me as far as my weakening legs can carry me. Sallie Mae turned me over to collections, and I need to laugh about my finances, especially living in such a pricey town.

Age 35, on Medicare, looking for more affordable housing in CA. Vegetarian

Re: Greetings from SF, CA

Posted: Mon Mar 12, 2012 9:39 pm
by PS19
don't feel alone. Were definitely on the same team.

I declined treatment. I have nice chats with the debt collectors few times a week. I'm broke.

Age 21. Medicare wont accept me. All my HARD earned money goes to food. Vegan.

Greetings from sunny san diego

Re: Greetings from SF, CA

Posted: Tue Mar 13, 2012 6:52 am
by Stillhaha
It feels good to hear that at least one other person does not want to kneel at the feet of Big Pharma. A new friend (oh, how I miss my friends from the Midwest!) who probably means well has pushed plenty of 'food' I never normally consider edible (strict low fat vegan on *my* dollar) in my direction, and poverty leaves me nodding along until the first of next month, when my Social Security reups. It takes two, however, and I need to remember that.

The lack of control I seem to have over my own life hits the hardest. In spite of the personal epiphanies about how my body works, the dishpits who insist that I lack 'nutrients' only found in burned dead animal muscles never stop pestering me. That perspective says more about me than them, however.

Screw it. I can only stick to my guns and hope (know, insist, deeply believe...) that I have made the right decision for me, just like the rest of us using this website. I need to keep finding comfort in those thoughts.

Re: Greetings from SF, CA

Posted: Tue Mar 13, 2012 12:40 pm
by want2bike
Food is the medicine. These drugs do not good according to Dr. McDougall. The NHS study shows this and you can see what the people taking the drugs have experienced.




Re: Greetings from SF, CA

Posted: Tue Mar 13, 2012 5:33 pm
by lyndacarol
Stillhaha wrote:It feels good to hear that at least one other person does not want to kneel at the feet of Big Pharma....(oh, how I miss my friends from the Midwest!)

You will find many new friends here at ThisIsMS who choose not to use the conventional MS drugs (Copaxone, Rebif, Avonex, Betaseron – the CRAB drugs). Some of us are even in the Midwest!

Please take the time to read the forum on Tysabri, and the Diet forum, too.

Welcome to the team, Stillhaha.

Re: Greetings from SF, CA

Posted: Tue Mar 13, 2012 6:47 pm
by Stillhaha
Thanks for the encouraging words. That post probably included some venting, but all things in time, they say.

It takes time, and I need to keep that in mind regarding everything. *sigh*

Re: Greetings from SF, CA

Posted: Thu Mar 15, 2012 9:04 pm
by PS19
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Re: Greetings from SF, CA

Posted: Thu Mar 15, 2012 11:05 pm
by Stillhaha
Thanks. Earlier today, I told someone that I need to give up worrying about money this month and just embrace the uncertainty. A bit easier said than done, but hey: with rent already paid, that just leaves food to manage. Staying in my room 24/7 could never happen, and I see some of the same people every day or two. Some of them already know about my tight spot this month (gives self dirty look in mirror for gossiping) and I need to accept help from others and possibly even request it. That happens in real life every now and then.

Assuming that I end up better off next month, I can maybe stay alert for others in... You get it.
Wow! Real life feels exhausting, sometimes. So much for squirreling away the years like a hermit!

Re: Greetings from SF, CA

Posted: Sat Mar 31, 2012 5:09 am
by sillyoldangela
Hi! I also live in the bay area. I got referred to the UCSF MS Clinic so I'll be over in SF a lot. I heard diet is really key. Lots of fruits and vegetables :)

Re: Greetings from SF, CA

Posted: Sat Mar 31, 2012 8:18 am
by Stillhaha
Diet = huge IMO. They think otherwise @ UCSF Neuro, from my experience. After the past month, I plan to increase my leafy greens intake, which certainly has to increase once I obtain a mini-fridge. Money changes everything.

Aside from the drug pimping, they have acted receptive, I guess. One of them might have recognized the word "idebenone" when I said it last year.

Nothing remarkable to report in that case.